Implementation and Evaluation of a Post-Diagnostic Announcement Protocol at the CRMR RefeRet, Quinze-Vingts Hospital

NCT ID: NCT07292987

Last Updated: 2025-12-18

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

NOT_YET_RECRUITING

Clinical Phase

NA

Total Enrollment

80 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-12-31

Study Completion Date

2028-01-31

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

This study explores whether adding early nurse-led and psychological support after the diagnosis of retinitis pigmentosa (RP) can improve patient experience and emotional well-being. RP is a rare, progressive eye disease often diagnosed after a long and difficult process, and receiving the diagnosis can be emotionally distressing.

Eighty newly diagnosed adults will be randomly assigned to either usual care or an enhanced pathway that includes early follow-up with a nurse, structured emotional monitoring, and a psychologist visit at six months.

The study aims to determine if this structured support improves patient satisfaction and reduces anxiety and depression compared with standard care.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

Retinitis pigmentosa (RP) is a rare genetic disease causing progressive vision loss. The announcement of diagnosis is a key moment that may trigger anxiety or depression, yet post-diagnostic care in ophthalmology often remains limited to medical information.

This prospective, monocentric, randomized study at the Quinze-Vingts National Ophthalmology Hospital tests a structured post-diagnostic support pathway that combines early nurse-led follow-up and systematic psychological support.

Eighty newly diagnosed patients aged 18-65 will be randomized into two parallel groups. The experimental group will receive early nurse consultations at 15 days and 6 months, psychological follow-up at 6 months, and repeated HADS assessments. The control group will receive usual care.

The primary outcome is patient satisfaction at 12 months (PREM). Secondary outcomes include changes in anxiety and depression (HADS) and feasibility feedback from nursing staff (RETEX).

Findings will inform the design of sustainable, multidisciplinary care models for rare eye diseases.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Retinitis Pigmentosa (RP)

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Usual care group

Group Type ACTIVE_COMPARATOR

Usual Care

Intervention Type BEHAVIORAL

Standard ophthalmologist consultation with optional psychologist consultation

Enhanced care group

Group Type EXPERIMENTAL

Enhanced post-diagnostic support

Intervention Type BEHAVIORAL

Nurse-led and psychologist consultation

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Enhanced post-diagnostic support

Nurse-led and psychologist consultation

Intervention Type BEHAVIORAL

Usual Care

Standard ophthalmologist consultation with optional psychologist consultation

Intervention Type BEHAVIORAL

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Diagnosed with retinitis pigmentosa (RP) and followed at the Quinze-Vingts Rare Eye Disease Center, with diagnosis made after the project begins
* Aged 18 to 65 years
* Male or female
* French-speaking
* Have a phone number
* Reside in France

Exclusion Criteria

* Pregnant women
* Participants enrolled in a therapeutic clinical trial within the past 12 months
* Individuals deprived of liberty by judicial or administrative decision
* Adults under legal protection or unable to provide informed consent
* Individuals with other medical conditions or taking treatments that could interfere with study evaluations
Minimum Eligible Age

18 Years

Maximum Eligible Age

65 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Isabelle Audo, Pr

Role: PRINCIPAL_INVESTIGATOR

CRMR Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts

Paris, Île-de-France Region, France

Site Status

Countries

Review the countries where the study has at least one active or historical site.

France

Central Contacts

Reach out to these primary contacts for questions about participation or study logistics.

Beata Monfort, PhD

Role: CONTACT

Phone: +33 0140 02 17 38

Email: [email protected]

Odile Cruveiller

Role: CONTACT

Phone: +33 06 12 01 98 25

Email: [email protected]

Facility Contacts

Find local site contact details for specific facilities participating in the trial.

Beata Monfort, PhD

Role: primary

Provided Documents

Download supplemental materials such as informed consent forms, study protocols, or participant manuals.

Document Type: Study Protocol

View Document

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

2025-A01308-41

Identifier Type: OTHER

Identifier Source: secondary_id

P25-02

Identifier Type: -

Identifier Source: org_study_id